Shakespeare Rachel’s Way

It is so easy to sentimentalize the reality of developmental and cognitive disabilities and miss altogether the difficult daily challenges people with disabilities and their families face. With good intentions we say things like “God only gives a burden like this to those strong enough to bear it” and “She must be such a gift to you” and “She must teach you so much” and miss the commitment of resources, energy and time required of parents and families of persons with developmental disabilities.

And yet, there is truth, deep and important truth, in those popular, well meant oversimplifications. I know. Rachel Diane  is my granddaughter, born with Down syndrome, now 18 years old. When she was born, a retired child psychiatrist attempted to be helpful by telling me that Down syndrome babies are cute but real problems will come when she is school age. She was right, of course. There are unique and tough challenges. But a lot more than problems come.

Rachel is a gift to her parents who have learned about loving patience, about the culture’s painfully slow process of understanding and providing people with developmental disabilities opportunities for a full, productive life. She has taught her younger brother and sister what it means to be a family and how a family can be a bulwark, a safe haven in a sometimes frightening world. She has taught them about solidarity, standing together, sticking up for and protecting one another. When she was 6 and her little brother was 4, some of his school mates were making fun of Rachel. His teacher overheard him defiantly defend his sister, “She can spell ‘cow’ and you can’t!”

I see Rachel once a week or so and her greetings are so exuberant, so full of unrestrained happiness, that it truly lifts up my heart. No one is as glad to see me as Rachel and she is a gift to me.

She has also introduced us to a whole community of wonderful people we would never have known if it weren’t for Rachel. Parents and families of children with Down syndrome find one another, offer mutual support, organize social activities, and enjoy a special friendship. When my son, Rachel’s father, heard about a young father who was devastated to learn that his new daughter was born with Down syndrome, he picked up the phone, invited the man to lunch to talk and to be assured that life had not come to an end.

Rachel attends public school and Illinois provides for her to remain in school until she is 21. She is mainstreamed, attends class with her abled classmates, but also receives special attention in classes designed to provide valuable life skills. She loves school. She sits in the window every morning waiting for the bus that Chicago Public Schools provides to all children with disabilities to arrive and deliver her and her friends to high school. She is included in classes such as physics, journalism and English. She plays basketball, sings in the church youth choir, and has a summer job helping with a day camp for kids with developmental disabilities sponsored by the City of Chicago Parks and Recreation Department.

Last Sunday evening, along with 400 other friends and family members of young people with Down syndrome, we attended a production of William Shakespeare’s The Taming of the Shrew, sponsored by a remarkable organization, Gigi’s Playhouse. A non-profit organization founded in a Chicago suburb in 2003 to increase positive awareness of Down syndrome through education and individual empowerment, Gigi’s Playhouse now has operations in several other cities. The Taming of the Shrew was presented by Gigi’s Teen Drama Group which produces several plays per year. We have attended Romeo and Juliet, Midsummer Night’s Dream and The Wizard of Oz. Last Sunday night Rachel and 16 of her teenage friends portrayed Baptisto, Lucentio, Petruchio, Bianca and Katherine, taking turns with the different roles. The magic of it all, and what touches me deeply every time I see it, is the love and commitment of the young volunteers from Chicago’s theater community. They do the set design, costuming, lighting, and for each role – which the teenagers take turns portraying –  one of the young actors “shadows” each teenager, standing behind them feeding Shakespeare’s lines in a soft voice. The youngsters repeat the lines and vigorously act the emotion and Shakespearean wit and passion with great enthusiasm.

The troop and their volunteers meet every Friday night for rehearsal, socialization, and team building.

In a week characterized by obsessive television coverage of two murder trials, ongoing investigation of the Boston bombing and hunger strikes by prisoners at the apparently irresolvable tragedy we have created at Guantanamo, Rachel pouring her heart into her roles as Bianca, Petruchio and Katherine were, for me, a note of hope about the human prospect.